 Okay, well, I will go ahead and get started for the sake of time for those of you that are hopping on right now. Welcome. And thank you so much for joining. I'm really excited today to be today's moderator for our panel titled balancing life with your medical care needs. My name is Sarah Miller. I am our director of partnerships here at the patient safety movement. And we have a lot of ground to cover. So we're going to go ahead and get started. So I will very quickly go through a few housekeeping items, but to start first and foremost, I will go through the objectives for today. The first being discuss how complex medical care needs impact life and wellbeing. The second identify the components of the care plan that can be optimized to better see personal needs. And then finally describe strategies to balance medical care with life and wellbeing. So today, just again to go through some housekeeping items. And we're really excited to announce that we will be offering one approved CE hour for BCPA credit. This CE hour is only relevant for those who are on today's live webinar. But if you have any questions at all, please feel free to email education at patient safety movement.org. And just please note that the CE may take about five to seven days to process. But again, this does only apply for those that are on today's live webinar. The next thing that I will highlight is the chat versus the Q&A. So for all of you that have joined, you are muted upon entry. So you are not able to speak at this time or at all throughout the webinar. But we will have about 15 minutes at the end for a Q&A session. So if you have any questions for our fellow panelists throughout this webinar discussion, there is a Q&A chat at the very, very bottom of the Zoom. So please pop your questions in there. I will be filtering through them through today's presentation. So at the very end, we will ensure that your questions are answered. And then the chat feature. So you'll see on this left-hand side that we do allow people to put just general comments, questions, discussions in there as well. So we would really encourage you all to utilize that if you have any questions, technical questions, please pop them in there. But again, questions for the end of the Q&A session, please pop them into the Q&A chat at the very bottom of the Zoom. The next important thing that I wanted to highlight is Slido. So we will have a few interactive questions for you all to answer today. If you want to scan the QR code, again, this will be available in a few slides, but you can scan the QR code directly from your phone and you'll see the questions that will be asking there. Or you can go to www.slido.com and input the 413894 as the code. Again, this will be available in a few slides. We would really encourage you all to join and get your questions and responses in. So with that said, I know I introduced myself already, but I'm really excited to welcome all of our great panelists for today. Christa, Jennifer and Alicia with us. But I would love to allow you all to introduce yourselves personally. So Christa, I'll have you go ahead and get started. First, I want to thank you, Sarah, and the Patient Safety Movement Foundation for all that you do surrounding patient safety. As a patient advocate, I've been a partner with the Foundation for about four years now because I believe in your mission of zero preventable patient harm and death. I'm so incredibly honored to be here with such a dynamic group of panelists and I look forward to the conversation. My name is Christa Hughes and I'm the founder and CEO of Hughes Advocacy in which I'm a board certified patient advocate. I've worked in the medical industry for over 20 years and started by company because I was personally affected by a medical error. Thank you. Thank you, Christa, and we're so happy to have you. Jennifer, can you introduce yourself? Hello, good afternoon. My name is Jenny Lewis, and I am the school project manager for a charity in Edinburgh, UK, and the charity is Edinburgh Young Carers. We are a respite charity that offers respite to young carers who were impacted by the ill health disability mental health or substance issues of a person that they love. So I'm really excited to come along today. A lot of the young carers who we work with are directly affected by a lot of the issues that we're going to be speaking about today. So thank you very much for having me along. Thank you. Thank you, Jennifer. We're excited to have you. And last but not least, our very own Alicia Cole. Can you introduce yourself? Yes. Hello, everybody. And thank you for being here today. We've got just a great hour of information and help to help you along this journey in this path, and to hopefully lighten your load and your burden. We've got some wonderful work that's going on here. And Jenny, especially thank you for being here across the pond. We know the time difference. And then as well, you are reaching young generation caregivers. And that is so important because as we have an aging population, many young people are finding themselves taking care of parents taking care of grandparents and so that is such an important and often overlooked demographic so thank you so much for being here. I am a patient safety advocate. I have been working with the Patient Safety Movement Foundation since early in its beginnings and I'm actually a board member for many years, but I did not start out in healthcare. Prior to 2006, I was a working actress. I was an athlete and actually you can see we have a slide that my niche was playing doctors and nurses. Like, on the original Beverly Hills 90210, I was the nurse whenever they had to go to the hospital that's the handsome irons airing right there. I was the doctor in the fight against childhood obesity for the state of California campaign. I done the LA marathon. I was a healthy person with no comorbidities, no risk factors. And so when I went into the hospital in 2006 to have two small fibroids taken out I had no idea it would completely upset my world and thrust me into an actual world of being a patient and being involved in healthcare. I had surgery, and when I left the operating room, I left the operating room with signs of sepsis. And that what should have been a two day hospital stay turned into six additional surgeries, two months in the hospital, almost having my left leg amputated and open abdomen for three and a half years, nine blood transfusions. And over a decade of weekly medical treatments and after care. And then in 2016, during some after care, I experienced medical error once again that led to two more surgeries and two more blood transfusions deep vein thrombosis blood clots in both arms from central line infections which are preventable never events. And so, today, I'm hoping to share all of the experience that I've had you see in the top picture. I'm there having my abdomen shaved with a scalpel every Wednesday, I had hyperbaric oxygen chamber treatments for five months. It was the only thing that stopped my abdomen from draining after three years physical therapy. Some of my lymph nodes and so for three and a half years every morning when I woke up I never knew what the shape of my face was going to be if this side was going to be swollen both sides, what you can see the scar tissue runs across my entire abdomen and across my leg where they were going to amputate everything below my belly and across my pubic area and across the top of my left thigh was missing. It took my dressing changes three and a half hours to people doing them. So, we've got a lot of experience from the advocate perspective with Krista and Jennifer, and hopefully I'll be bringing to you, the patient perspective, and just sit back and and definitely if you have questions put them in that chat. Let's go. Well, first of all, I cannot thank you enough for your bravery and your hard work you've made such a difference in patient safety. I know this isn't something that you signed up for but it doesn't go unnoticed so thank you so much for joining us and we're really happy and excited to have your perspective today. So I'm actually going to start with you. And my first question that I have for you is, you know, what are some clear examples of complex medical care but what are also some ones that might not be as obvious. Okay, so complex medical care can mean so many things. If you have a chronic condition that needs maintenance and care, whether, you know, asthma can be a complex medical condition if you don't take care of it properly. And you're on the right medications. But when we're thinking about things most people don't think about tube feeding. You have to get that amount of water and fluid that goes into the mixed right every day. You have to make sure you know how to do the tube dressing changes properly so you don't rip any holes and then you end up with wound care. So wound care is a chronic condition that if it's not done properly at home can lead to secondary infections, which can lead to readmissions. So in addition to the types of chronic conditions that we think about diabetes high blood pressure. Those are also things that we want to be aware of. Thanks, Alicia. Christa and Jennifer, I'd love for you both to win on your perspectives of some clear examples and some not so obvious ones. Christa, I'll start with you. Well, to piggyback off of Alicia, the, you know, the obvious are like cancer, COPD or stroke, even mental illness. In my world, less obvious would be you having a complex surgery, and you've got to decide are you going to go home health, inpatient rehab, skilled, you know, I saw on, we're looking at the slide that says from Alicia discharge is just the beginning. That's difficult and that's complex discharging. Durable medical equipment is your home safety first. You know what's best for your life and your finances and your situation to me is also part of complex medical. Medications when you have a lot of comorbidities complex medical care comes complex medications and with that is understanding them or leading to medical or medication errors. Yeah, that's that's so important Chris to absolutely. Jennifer, is there anything you'd like to add that wasn't already highlighted. Mental health, I think I'm going back to Chris said definitely mental health and if that is combined with other long term complex conditions, which does, which we do tend to see happens quite a lot can make things really, really tricky for the patient and for the family. Epilepsy. I'd like to highlight that when we come across young carers who are caring for someone with epilepsy. That is a multifaceted condition with many things that can happen. From a safety perspective, and purely from a perspective of the caregiver being really scared when something like that happens. End of life care as well. In the UK and Scotland we're looking at different procedures and supporting the family around end of life care. And when you get multiple health issues combined but also when you have multiple members of the same family with multiple health conditions as well can be really complex. And you know what, can I also add in something else I thought about that isn't often mentioned, and it's not something that affects everyone, but for the African American community sickle cell anemia is something that causes a lot of chronic problems conditions a lot of pain I have a sister in law who died from sickle cell anemia complications. And it's because it's something that is more prominent in minorities. A lot of times the larger medical community does not understand it they don't know how to treat it they don't know different recommendations and things like that so that is a really hard to manage complex condition that a lot of people are not aware of and don't think about. Right. Okay, so I'm actually going to lead in and reshare my screen, because the first slide question we'd like to answer the audience have the audience answer. Just give me one second. Okay. So you'll see up on the screen here. Again, we want this to be as interactive as possible so please scan the QR code that's at the very top here, or you can join at Slido.com and put in the pound 413894. I will leave this up for about 30 seconds to a minute so while you're logging in we'll give you guys some time, but we do want to keep the discussion going so Alicia from from the patient perspective, what do we mean by balancing life with medical care I'd love to get your thoughts. Wow, that's, that's a great question because it's a delicate balance so when we say balancing life balancing life if you're a healthy whole happy person. That's difficult. I mean there are whole, you know, movements about life balance work life balance. And then if you throw in a health condition on top of just trying to balance your life. It affects everything. It affects the dynamic of your relationships. For example, you know, my parents had to come and live with me for eight months the first time. My parents, who were in Ohio, came to California to take care of me for eight months after my first hospitalization, because I couldn't do anything for myself so that totally threw off the dynamic of our family. They had just purchased a home a new home they were scaling down, and it totally they weren't even living in their house for the first eight nine months that they owned it. You know, all of your resources your money, your time, become diverted around your care, your relationships, the dynamics change, you could be a happy mentally stable person. But when you go for two three months, five six years, me I'm going on two decades of constant medical treatments my life. So my dressing changes took three hours, and it took two people to do them. So for the first three years I got out of the hospital. My world revolved around the morning dressing change and what time the nurse was coming and the evening dressing change and what time the nurse was coming back. I could only leave my home for so long because the more I walked the more fluid went to my bandages and if I did too much activity, it drained through the bandages and then seeped into my clothes and I had to sit and try not to move until the evening dressing change when the nurse came back. So my entire life balance was thrown out of whack. And so for patients the challenge is to figure out a new balance for yourself. And who to incorporate in helping you achieve that balance, family, friends, what resources, all of them. Yeah, I can imagine how much time it gets, you know, it takes to get into that group of things as well when your whole world is spun upside down but thanks for providing that insight. I will bring it back really quickly because I do want to reflect on the slido question so for those of you that were able to fill it out you'll see here about 10 people did fill it out and 80% of people on this call today are clinicians are healthcare professionals so that is interesting. 50% patient advocates 30% patients up it looks like more people are responding. Now we're back up 55% advocates and 36% caregivers or family members 27% patients and then other is 27%. So that is very interesting. For those of you that are on the live webinar and you did indicate other. If you would be willing to kind of pop into the chat what your other category is just so that we can kind of get a good handle on who else has joined us that would be great. But thank you all for kind of tuning into this live interactive poll. Go ahead Alicia. I was gonna say, I'm really glad that there are a lot of clinicians and healthcare professionals on the on the webinar because the funny thing is, most of the time when you leave the hospital and you have a complex problem. The doctors and the nurses who took care of you have no idea what happens to you once you leave their hospital, or once you leave their floor and their ward. And so, many of my doctors had no clue like when they saw me back at the hospital, you know, a couple months later a year later, they had no idea I was still in treatment. They had no idea that my wound took three and a half years to close and that I was going to a wound care center once a week, every week for three and a half years. And so doctors and nurses often and especially if it's due to medical error, you know, you get that wall that that closes off and and so they're not allowed to talk to you they're not allowed to speak to you follow up with you. And in many instances, and so they have no idea what happens with a complex patient once they leave their care. And so thank you for being here so that you can hear and learn about what patients go through. And so they leave the doctor's office. Yeah, absolutely. We're very excited to have such a range of people on today's call. And so with that, I wanted to kind of pass it over to Krista I love from you know the patient advocate perspective. What do we mean by balancing life with medical care from your perspective. First of all, at least to those were excellent points. Excellent. And I too am glad clinicians are on this call as well. You know, as an advocate, kind of my job is to be their balance. You know, I prepare for all the appointments and get them get all the appointments made all the lab results. You know that that's my job to make sure that they're giving their narrative their story. They're empowering them, you know, they're part of the shared decision making. You know, I have a client that's 80 and he has six comorbidities and his wife has Alzheimer's and on top of it they live out of town. And so part of my balancing for this family is I try to get all their appointments scheduled the same day. There are two doctors, their dermatologist and their primary, they see the same doctor I try to get those the same exact time. And by doing this, it's saving gas money. It's he's not having to get a sitter for his wife. You know why he's gone. She gets she's at that stage she gets very agitated and angry. So this reduces her stress and anxiety. And that's what the balance is when you have something complex is reducing those, you know, stress factors, you know, taking all time for work and for school, etc. You know, takes a lot and then, you know, Alicia was mentioning my dad had a hip replacement two weeks ago. She is correct where you balance your caregivers balance our whole life around them. It was you've got to get up every hour and walk, you know, and he's on all these pain meds. So he's a fall risk and it was wound care. I mean, it's a constant and sometimes I always say the caregiver really is the patient, the patient's not the patient because it's our job to remember the medication schedules and get up at walk and clean the cake, you know, so the balance is also teaching the caregivers how to balance and ask for help, because they too are sometimes more the patient than the patient. Yes. Absolutely. Absolutely. Yeah, so Alicia, I wanted to kind of pass it back to you, just to kind of start highlighting you know what populations are groups are more at risk for poor balance of medical care in life I'd love for you to kind of weigh in on that from your perspective. Well, I think Christa touched on, you know, the elderly. They are so at risk, because they need help, they cannot do it alone. You know, my mom is a survivor of five strokes and has a pacemaker. I am her caregiver while I'm also caring for myself so we are the epitome of complex. You know, and then as I said with Jennifer, the very young who are young and healthy, and they don't even know what to expect and what to do and so, you know, the people who are at the extremes, the extreme ends, but then also the obvious is minorities and people of color. We already know about higher maternal maternal maternal mortality rates. We know that with diabetics African Americans are more likely to have amputations than other, you know, ethnicities. And so, you know, we have to look at the system and start to work on, not only access to care, but access to safe care. To equity and respect, you know, we, the Joint Commission had the speak up campaign years ago. And but what a lot of people who make these campaigns and these decisions, they make their thinking with their best minds right, but they don't realize that as an African sometimes speaking up to a doctor who's not a minority is seen as a challenge. You're seen as the angry patient, like I can't have the same forceful conversation and stand my ground and demand to see the CEO or make any threatening comments, because I will have security brought over and summarily escorted out of the hospital as a black person. I can't do that. You know, I can give you a quick example of just in 2016 I said, you know, I had another hospital acquired infection and medical error situation. After 10 years of medical care, I was on the goal line I thought I was close to being back to normal. And I, you know, I've been wearing masks since 2007 in large groups. And I, after 10 years I was invited to a festival I thought, you know what, I'm good, I'm not wearing a damn mask, I was like one of those people. And two days after I left that, that will actually the next morning I woke up and my head was in a sieve, and I was. So, in two days, I was back in the hospital. And I tried to explain to the doctor, I'm a high risk patient, this sinus infection I've got purulent pussy drainage coming from my nose that has pieces of flesh in it, and he tried to discharge me with high powered antibiotics and I said, you know, I would feel more comfortable if we wait for the labs to come back. And the, the, you know, the lab work and the cultures. And he said oh I didn't even do any of those you've got a sinus infection man, and I said you didn't like twice the nurses had me to blow my nose up and ran it over to the lab and you just said don't test it. And I said well I don't feel medically safe to be sent home. I am a super high risk patient, I'm having some issues, I'm in early signs of sepsis. And he said ma'am, I am the best infectious disease doctor in the valley, probably in the state, no one is going to tell you anything different than what I'm telling you. I went out of the room and didn't come back for two days, and the nurses took care of me, while I declined the infection spread through my bloodstream to the worst part of my body. And before I knew it, I was calling advocate friends and I called a friend who was the director of that healthcare systems quality institute. He came to my room and had the CEO come down to have a conversation with me. And I gently took the CEO's hand and put it on my hip and I said do you feel that big warm puffy spot right there. I haven't have sex now. I already know I've had enough wound care enough medical care that I know in a couple hours you're going to be doing to save my life you're going to be taking that black magic marker and drawing around my hip. And eventually that open wound was like eight inches by six inches and five inches deep. When, if he had done cultures and labs for a sinus infection, he could have saved me two more surgeries two and a half more years of wound care, all of that. But this man was outraged that this black woman had the audacity to ask for a second opinion and demand labs. So we have to teach that out of healthcare. And if we can't teach it out if you are just a person who is standing in your biases in your prejudices in your stereotypes, then you don't deserve to be a healthcare provider. And we need to have systems stand on that and get these people out. And I agree with you on that. When my dad was just in the hospital, the hospital is lied to us. They messed up his medications. It became all of our faults when you know you get tired of it and I said I want to know the doctor. But if this is going on, I'm scared to leave the room. And because I suggested it, no doctor saw him the rest of the time they just abandoned him. There was no evidence. This has got to stop. We, you know, basically, in my opinion, healthcare works for me. I don't work for them when I'm in there. I'm your customer. And you should treat and it's gotten where if you stand up for patients these days or stand up for your loved ones, you're the enemy. Yeah. Is it like that for you, Jennifer, in the UK? I mean, do you guys have those kind of problems as well? We do. Yes, we definitely do. And I see it every day in the work that I do and especially with the age of the children that we represent and that we support their voices are very often not heard and not listened to as I'll find when I go through a case study in a few minutes, I'll give you a little bit more detail of a really strong example of that. But from a personal perspective as well. My dad was taken into intensive care. And we, we thought he was having a heart attack. And we continued to say to the clinicians, Dad's never had a day off work. Dad has, you know, knock on over 60 never had a day off work. This is very unusual. You need to take this seriously. And he died. And it was, it was, it was that lack of patience and care of voice. We're all saying this is unusual. This needs to be treated as very serious. And I think in the UK obviously our systems are very different. We are stretched at the moment. We are in the middle of a crisis in terms of staffing in our health care system and in the care system as well. And it's, yeah, things are very difficult at the moment and we're more and more frequently being told stories of ambulances not turning up ambulance delays, people not being listened to it's becoming more and more frequent. We're here. And Jennifer, what are some other family factors that play into this? Could you give us a few examples? Definitely. So the family factors, obviously, and the voice of young carers. So just to put the word young carer into context, the charity that I work for we provide support advocacy and information to young people between the ages of five and 25. And when I say, we work with five year olds, a lot of people go, hmm, can a five year old be a young carer? The answer is absolutely yes. And we are getting the majority of our referrals at the moment after children between the ages of five and seven. Those young people support a family member who is disabled, has a low term health condition, struggles with their mental health, maybe drug and alcohol is a factor, always coming towards the end of their life. And it's about the impact of that ill health that that has on the young carer. So I'm going to share a case study with you. I reached out to my team who support the young people who we work with and asked for a case study where balancing life and health care was a real issue for that family. So I'm going to share you the story of Liz. Liz is seven. And she's a young carer for a mum who has a functional neurological disorder, fibromyalgia, dissociative seizures, depression and cardiac issues. Mum's health has always been incredibly poor over the past year of working with this with child. Mom has had two significant seizures, which have resulted in long hospital stairs, sometimes two to three months. In the immediate aftermath of these seizures, mom loses her ability to speak and move. And this is hugely traumatic for the family. Going back to Liz, Liz is seven and she's watching this with time and rehab, mom's speech and movement returns, but this is a significant period of time. Mom has only just been discharged from hospital but is not yet able to move or use her legs and his wheelchair bound. Occupational therapy are currently assessing her as she's unable to live independently or care for her children at the moment. Mom was hospitalised at the start of August and Liz has been living between her dad's house, her elder sister and her friend's house. This different situation is hugely upsetting for that child and she's going between three houses within a week. The night's here, night's there, she doesn't actually know sometimes who she's going to go with because it's very ad hoc. She's frustrated, she's exhausted, she's travelling so much and she's desperately missing her mom. Visiting times in the hospital are very restricted and she's only being seen her mom once a fortnight and all these visits take place outdoors due to COVID. It's been a horrific experience for the family and sometimes the visiting hours are so short that they've only have a short window between the child finishing school and mom having her dinner. So on a few occasions they've actually taken her mom McDonald's just so they can sit with her while she has something to eat. The key issues around this child and this family are a lack of information sharing about mom's condition and about her long-term prognosis and recovery. There's been no allocated NHS point person so communication has been poor. This makes Liz and her siblings really worried because they don't know what's going on. Visiting hours are restricted and clash with meal times. The mom doesn't have a private space to call the children on Zoom when she's able to. There's no positive space for them to visit and all visits have taken place outside. Reminds that mom's in a wheelchair, she has a seizure, she's partly paralysed. The mom has been discharged without a care plan in place and she does have an allocated social worker who have been amazing but they really had to fight to get an assessment despite her clearly being able to live alone independently. There's been no emotional support for health of the children who have undergone significant trauma witnessing mom experience these things. I think that gives you the context of a family who are experiencing this kind of long-term health condition. I think the other key family and social factors that need to be taken into account of those with mental health conditions tend to be forgotten. You can't see it. It's not visible sometimes. Drug and alcohol as well, there is still definitely some stigma if drug and alcohol is in place. Even if it's drug and alcohol alongside health conditions as well, there is quite a lot of stigma around that. Those who don't speak English as a primary language, you have to fight for an interpreter to come along and explain these things. And also people maybe who struggle to understand complex information and need someone to be their advocate and to simplify things. People who are new to the community, so in the case to do that I give you, that family was originally from Perth, moved to Edinburgh and when mum fell out they were just lost completely. Healthcare professionals often don't look at the family as a unit and forget that family members are vital to that person's, to their future, to them getting better. Also the economic stress of a long-term health condition as well. We fight for families to get things like blue badges so they can park in a disabled bay so that they can have bus passes to be able to go to that really out of town hospital to see their loved one. And even things like if you, when we were visiting dad in intensive care, we were there for five weeks, cost a lot of money because we had to eat in the hospital, you know, food is not subsidised in hospitals. You go into Costa and that's £10 for a lunch. And if you're doing that three times a day, then when he quickly adds up and also negotiating the benefits system, particularly for people who are coming towards the end of their life. It should be simpler that someone who is navigating a really complex health condition, such as cancer, shouldn't have to navigate a really difficult benefits system. So yes, there are a number of issues. And I'm sure there will be some that I haven't mentioned and are equally important in this discussion. Yeah. Yeah. And you know what, Jennifer, you're so right. Often mental health is not brought into this. But let me tell you, depression is real. The struggle is real. When you are, your life is completely turned upside down. And everything revolves around your care, the money, the time, the relationships, the everything people are tired of helping you. You're tired of hearing your medical drama, people, you know, so you may lose friends, you may gain new friends, your whole conversation, you know, for a long time I didn't call some people because it was like I have nothing new to say. Everything I have to say is about healthcare people. That's my life. So, and then, you know, you have to get help because when you're depressed, you can't sleep. You can't sleep. You don't function during the day when you don't function properly, you don't take your meds properly. So I tell all patients, if you can afford it, if there's a program in your area, get some help and counseling, do not be ashamed. You have to take the stigma out of it and take care of your mental health to take care of your physical health. I think it's adding completely to what you say Alicia, it's very true. It's unusual actually for us to get a referral where the mental health box is not taken. It's very unusual because it often goes hand in hand. If you're struggling with your physical health, you're going to get down, you're going to feel negative, which can lead to adverse mental health. So yeah, completely agree with your point. I'm actually going to transition into the next Slido question. And while I'm prepping it, just remember again scanning the QR code or joining that Slido.com. We'd love to kind of get a little bit of a pulse on, you know, how many of you know different types of caregivers. So again, while this is up, we will continue the discussions because we're getting close to the end of time. But the next question that I wanted to ask is for you, Alicia, you know, when you're trying to engage with your health care provider, how can you anticipate what pieces of a medical care plan might be difficult for you to balance with life and, you know, what do we need to do about it. So I'll pass it over to you. Okay, so if you're, you're looking at ways you can engage with your care provider and how to be part of that. The number one thing you have to do there's the saying to that own self be true. You have to be honest with yourself. First, what are my new limitations. What are my financial limitations my home situation limitations my circle of support limitations. What are my goals, what do I want from my care, and you have to do a self assessment as a patient, like where you are, honestly, and where you're trying to get to. And from that point, then you can be honest and start with your caregiver and your advocates. I need help. Like I had to tell people if you want to help me I tell you what, send a gift card for a restaurant because with an open abdomen and me moving around in the kitchen, moving and bending reaching up at shelves and on the stove bending forward, you don't realize how much you use your abdomen and when I use my abdomen, it causes moisture and the moisture seeps into the padding and the padding seeps through my clothes through my to my So I said, I don't cook. I had to stop cooking like meal meals. So it was more helpful to me to have someone give me a gift card to, you know, someplace to get a healthy meal. You have to be honest about your needs. There's no drugstore close by in your neighborhood and you don't have transportation to get there. The doctors that doesn't know that unless you tell him. If you, if you are taking seven pills, and one of the pills that you take makes you super fatigued and sleepy, you have to tell the doctor that so that he can say maybe, like, like metropolis tart rate that patients who have heart issues take. Usually one in the morning one in the afternoon but some patients that pill makes you feel like you just ran a marathon, like you just sit on the couch and you can't even move. You have to tell your doctor because then he'll say, cut that pill in half, take it half in the morning and half in the evening instead of a full pill both days. So, you have to talk and be honest about the fact that there's no, you know, grocery stores in your neighborhood and there's no buses to get your groceries. The fact that by the time you pay the copay on all your bill on your on your medical prescriptions. The last one, you haven't been taking regularly because you don't get that pill as often because you have to cut costs somewhere like I had literally a wound care product that my copay was $600. So, in addition to the other copays for the month so you know you have to speak up and not be ashamed or judge yourself because you're a patient and and really be honest with your caregivers when they're giving you, you know, what you're going to do in your discharge and what you're going to do, going forward in the future to become a whole patient. Absolutely. I mean Jennifer I'd love for you to weigh in as well, you know what are some social and developmental factors that patients and families should consider. I think before I go into that it's all right by linking with Alicia just said about that patient voice and about thinking of yourself I think it's also crucial to remind the clinicians on the call to ask questions. Inquisitive about the family circumstances and the home circumstances of your patient. A recent paper that I read, by the way there's been very little clinical research into people's awareness of young carers. And there was a study done by the University of Paris where they asked 30 oncologists, do you know what a young carer is? Do you come across young carers? And half of them, when they were given a definition of a young carer realized that they did they came into contact with them frequently. Most of their patients were looked after by young carers, but very few of them could identify which patients were actually looked after by children. So it's about being inquisitive and asking those questions and being frankly nosy, because only then can you get to understand the real complex needs of your patients. So I think in going back to Sarah, sorry, your original question, I think it's crucial that we should have a joined up approach to these things and starting and collaborate and bring things together. So for example, not making appointments for patients before their test results have come back, because that might have cost that patient all their bus money for that week. And you're asking them to come in basically for nothing. Thinking about access to hospitals, are hospitals really mobility friendly? If you're in a wheelchair, they should be easy to access, but sometimes they're just not. And I'm going to talk about the cost of prescriptions, but Alicia, when you said £600, I feel like I should kind of back down a little bit. But I mean, the cost of prescriptions in the UK is just over £9 per prescription. But unless you're medically, you get a medical exemption card for some people, £9 is a massive amount to spend on a prescription. And it's either do I eat this week? Do I buy this prescription? And that thought process goes in many people's minds. The difficulty in accessing things like disabled by agent parking, the lack of emotional support. And I think, yeah, going back to asking questions about who is actually providing this care and also more, definitely more face to face work needs to be done. I recognize that we're coming out of a pandemic, but people need to be in front of a healthcare provider. You can only talk about so many things over a Zoom call. And I would say less gatekeepers, I think is a crucial thing, having people direct access to the medical profession. And also information for carers about what is actually happening. We, as part of the charity, we spend quite a lot of time googling complex conditions and speaking to children and saying, OK, this is what a mum has. This is the illness. We provide support to a child who sticks, whose mum has epilepsy. He has no idea what is going on when she falls ill, when he witnesses it. And we sat down with him and found a book and spoke to him about it and gave him, you know, drew him pictures and tried. And now he's like, OK, I understand what's happening. I don't feel scared. Is that up to us to do that? And if he hadn't been referred to us, how would he have got access to that information? He just would have been a little six-year-old watching his mum and being absolutely petrified. So there's many different things. Yeah, definitely traumatized. Excuse me. And I do want to reflect just really briefly on the, you know, the slido question of those that responded. It's interesting to see that we have, you know, a great range of types of caregivers and types of patients, you know, from senior caregivers all the way to, you know, knowing someone who's a patient or caregiver who doesn't speak the primary language. So all really great points that I know a lot of our panelists have responded to already, but just wanted to kind of go through this and see the interesting responses that we did get. Well, the next question that I did want to ask, I want to start with you, Alicia, you know, how do patients assess what parts of their care plans are normal things that they're going to have to deal with versus, you know, the components that they can modify to suit their lives? Oh, yeah. So my great uncle Bob lived to be 104. And his model was, blessed are the flexible for they shall bend and not break. And that's what you have to be as a patient with a complex condition and trying to balance your life. You have to be flexible. So, and you have to modify your life. And that starts with acceptance of your condition, acceptance of where you are right now. And then move forward. So I have this slide. And in the bottom corner, that's me driving like with abdominal problems. I had to that's, that's the last pillow off the couch that my brother gave away while I was in the ICU. But it perfectly fit across my abdomen and protected me while I was driving to doctors appointments or driving to the grocery store. So I had to do that and even now, all these years later, if I'm in a car and we drive and I'm driving any length of time. I have one of those airplane blankets and I have it rolled up and I put it across my abdomen, because I have to protect myself for I have scar tissue I have adhesions I still have like my leg goes numb, or my growing pulls to the left from the adhesions and the scar tissue my back hurts. I mean, even all these years later. I still have residual things that I have to account for you see that picture of me on the computer. That's where we turned my living room into a hospital room and that's me sitting in the hospital bed, working on the computer probably doing a blog about patient for a long time I was in a wheelchair and if I went to a conference or I went somewhere I could not go by myself. My doctor said, you have to have someone there to help you do your dressing change he will first he told me I couldn't go. And I said, This is a patient advocate conference I, they said I'm a patient advocate. I'm going. I don't care what you say. And of course I ended up in the hospital when I got back, but that's my sister, the organization flew in my sister to help take care of me. That other picture of me, I have canes and every color blinged out leopard print, whatever to match my outfits because I need sometimes when my leg gives out and goes numb, or my foot is throbbing. I have to have a cane to help me. That's just the way it is make it cute. Don't fight it. The other picture of me in the yellow for three and a half years. I had three pair of bibbed overhauls address pair, everyday pair and an emergency pair, because I had so much padding underneath, I couldn't wear pants. I could the elastic from skirts her. So I wore bibbed overhauls for three and a half years, and then again after my second infection in 2016. I'm like the queen of bibbed overhauls, but you do what you have to do you make them cute and you keep it moving. And at the bottom, that picture is my mom in my home hospital, preparing. She's got her PPE on as you see, she's about to do my dressing change. So we had to become experts that's what you got to do. You have to become an expert in your own care. You have to learn as much as possible about your condition because you may be the one who has the time to sit and read a JAMA article, or some information on the latest medication. Your doctor may not have time for that. Take a copy of it with you to your appointment and say what do you think about this doctor? I printed it out. It's from the Journal of Medical Whatever for my condition. Is there anything in here that can help? Say it in a respectful, not I know more than you way, but offer it up for them to be their researcher. There are other things like my mom has her heart pacemaker. I got her a Fitbit so she can check her pulse. She can check her steps. I had to turn off the Alexa for this webinar because every day at 1230 Alexa says, reminder, Betty's pills, reminder, Betty's pills. So set up on your phone, a reminder about your pills. You know, join organizations for seniors and get some respite care. There's also the military. If you're a veteran or if you're the spouse of a veteran or the dependent of a veteran, the VA has all kinds of programs to help reach out to them. And then there's meals on wheels. There's meal train. There's so many things, but you've got to be proactive and you've got to be honest with yourself and you've got to become the boss of you. And, and just stay as positive as you can. And just remember put one foot in front of the other. Some days you got to sit on a rest and do nothing. And then you make it up the next day. I love that you radiate positivity just by everything that you've been through. So I have no words whenever you're speaking, but again, we really appreciate the recommendation. Thank you. Krista, do you want any Krista or Jennifer? Do you have any other recommendations that you'd like to provide? I love the flexible and modify and, you know, accept. You know, I have a client that has a spoke of earlier with six comorbidities and his wife has Alzheimer's and they do not want to go to retirement community. And he's thought he could do it himself this entire time until now he's been in the hospital, but it's sitting with them now he's accepting it. He's now being flexible and we're modifying. So we're going to bring, you know, sitters and caregivers to the home because that's where they want to be. So it's, I like that flexible modify but they've got to accept it to adapt and always ask for help, you know, ask for resources, a better understanding. You know, my dad has AFib and I wish prior surgery we had put the watchman in place the device to take you off the eloquence because it would have made pre procedure better with getting off the blood thinners and the swelling. You know, it's just knowing all these things, asking if you're a candidate, adapting them to modify your needs, you know, to make your life better and give yourself your quality of life. Yes. Quality of life, that's what it's about. Yeah. And I think linking in with what Alicia and Christopher said, I think from a clinicians perspective what makes the big difference is if you can recommend organizations to your patients. You know, and I think, you know, suggesting to your patients, did you know of the charity that supports with this or this and they're full of useful advice and they've heard it all before. And they can be there to give to give that support and that reassurance and also linking with the people who are facing the same difficulty and the same trauma we've got a dedicated drug and alcohol team. They're young people who come together who all support someone with drug and alcohol. And you can hear when they're sitting down with their lunch they have those little questions and say, do you deal with this as well do you see this and I guess we do. So they're linking in with each other and that sometimes that support or somebody who's facing the same thing as your face and can be absolutely life changing and can limit social isolation loneliness and make you realize that there is light at the end of the tunnel that you're not the only one. All really great points. You know with only five minutes left I do want to ensure that we get some of these questions answered as we have quite a few that have come through. But the first one that I actually wanted to ask was for Alicia someone in the audience asked, could you address the challenge of keeping your home spotless to reduce infection risk, which I think is a really good one. Yeah, yeah, so let me give you just a quick on that wipes are the best, you know. So first of all, you want to limit the dirt coming in and the germs coming in so and especially in this time of coven anybody coming into your house I don't care vaccinated unvaccinated I am super high risk my mom is super high risk. I'm in here without a mask that's first anybody who comes into your hands for into your house first thing they do is wash their hands go to the guest bathroom. Wash their hands always keep paper towels, the easy short tear ones in your bathroom so that people are not reusing the same cloth towel in the bathroom, have paper towels so they can throw them away. You want to make sure you get you some whatever brand, whether it's the PDI Santa wipes or whether it's the Clorox wipes, wiping things down your high touch surfaces in your home so that if someone gets the flu or a cold you're not spreading germs round and round. Also, if you have a lot of like wound care supplies that you have to keep get you one of those little plastic. Their file cabinets, keep your supplies in there so they're all together, they're clean, they're dry, they're off the floor they're not getting kicked around. You have to be organized when you are a complex patient, but it's very important to keep your house as clean as possible now, if that means you have to get help and get someone in and you also have to get everyone in your family on board with helping don't try to do these things on your own because you're going to be too tired to be cleaning that's the truth of it. Absolutely. Good point. And I think the next question is from someone who's anonymous, but I'll just read it very briefly so here she said I am a patient safety expert who's taking care of her 90 year old mother, who's in a rehab facility in Florida and she's dealing with her coordination from long distance. She's getting very poor care, and she doesn't want this anonymous attendee to discuss this with the administrators anymore because she feels the AIDS are taking out on her. And do do any of you guys have any thoughts or suggestions for how to handle this scenario. Hard one. That is tough. Because I mean I've had that where, if you if you say something there has been harm, but then there's been also the good where I've asked to do like a FaceTime call and do like the huddle. So we can all discuss a treatment care plan and try to get everybody on the same page. That is hard, but usually if you can get everybody together and on the same page and everybody, you know, what is it 80% of medical errors are due to miscommunication. You know, let's talk about it. Let's all just get on a call at a time that's convenient and talk to and come up with a care plan because I mean that is your role is as a caregiver or adult child is you're to be involved in this shared decision making so to push the envelope, let's do it, make it and force it or get her out of there. That's kind of my take. That's just my personality it's like my mother's health or grandmother's health is more important. So, if you feel there's going to be harm, then that's not a good signal to me. Yeah, and you know what piggybacking on that Christa I had a situation with a friend of mine whose sister was not getting good care. And now she's got beds or she's got this she's got that and at some point you're whoever the anonymous person is you've already been labeled a problem. You've already been labeled antagonistic. So, you know your loved one is suffering so at this point don't worry about trying to be friendly, go make a call to the health department. Very facts tell. Okay, you don't use words like they're trying to kill her and they're this and then you know you want to say things like substandard care. Never events she has a bed soar that and that is a never event. She's not getting timely care with her medications you want to actually list out in medical criteria and medical terms. What is going wrong in the care lack of communication lack of response to your concerns and you want to put that in a document and get to find out make friends with the local health department who is over the health care to be home health care. Not home health care, but the SNFs and the extended care facilities file a grievance file a report so that they it triggers an investigation and the health department can go in there and look around. And I helped my friend do that for her sister and Los Angeles County Department of Public Health went in and found all kinds of violations that were affecting many people. And they had to do something about it and clean it up and at that point they were a little less likely to ignore this woman and also she made they made sure that they started taking care better care of her sister. So you want to escalate to those who have some authority escalate to those who can do something locally. Make those friends with the health department and then if there is an elder care lawyer or elder care advocacy organization in that area where she lives, call them up explain the situation because you may be able to get a local elder abuse elder care advocate or lawyer who can look into the situation for you. Well, Alicia will piggyback requests on your time, but you can go to the CMS hospital compare.com, and you can pull up your local agencies, the assisted living skilled, and within that it shows a quality report but it also shows the album I may not out of the Department of Health deficiencies per facility. And you can see if there's a common denominator that's going on with you so pull those health records because they're public knowledge before you a decide where you're going to go but if that's going on see if that's something that's been going on within this institution or facility. Yes. That's a really great point and great answer for that scenario. I know that's a difficult one. Well, I know we are right on time. I just, I want to thank you all so so much you are all very, very inspiring and we really appreciate you sharing your stories and experiences and recommendations with all of you, all of everyone on the phone today. I did just want to do one quick housekeeping item again for those of you that joined the webinar a little bit late and we do offer one credit and CE credit for BCPA. And so again if you have any questions feel free to email education at patient safety movement.org. And then a final reminder here at the patient safety movement we do provide all of our educational programs for free. So as a nonprofit we do accept you know individual donations and organizational donations so if you, you know, want to keep seeing our educational activities happen we really ask that you, you do donate so visit our website and you know research that a little bit more but again thank you all so so much for joining thank you to our lovely panelists and we hope you found this webinar very helpful. Thank you. Thank you. Bye bye everyone thanks for joining. God bless you. Take care. Thank you.